Strawberry
Senior Member
- Messages
- 2,109
- Location
- Seattle, WA USA
Okay, I have never even heard of this before, but now am being told I have this! Does anyone else have this? Or even know about this? I haven't found anything directly linking to mast cell disease, but I am so baffled.
I have one family member that died under anesthesia (uncle), and two others that nearly died under anesthesia (dad and brother). I have always told anesthesiologists this before any procedures. I have a surgery coming up soon so had talked to the doctor about it, now they are trying to figure out if they even dare touch me. I have not talked to the anesthesiologist yet, although he is to call me today.
She also wants me to get a medical bracelet ASAP.
So now I am wondering if this is part of MCAS? Does this fit in with ME/CFS and how so many of us can't tolerate anesthesia???
If it was just one procedure, I think I would be fine with it. Problem is that it is a wire guided surgery and I am to have a wire inserted a few hours earlier. I had a biopsy a few weeks ago (negative for cancer at least) and mildly reacted to the lidocaine (epi free). So they want to give me epi free lido, then 4 hours later sedate me with what ever malignant hyperthermia drug. Doctor is nervous. As I have all ready stated, I have not talked to the anesthesiologist.
Hmmm, another thought, this IS the same hospital that my dad and brother nearly died in. Maybe they still have records from that far back. Doubt it. But worth asking anesthesiologist.
Sorry this is so long, my brain is racing now.
I have one family member that died under anesthesia (uncle), and two others that nearly died under anesthesia (dad and brother). I have always told anesthesiologists this before any procedures. I have a surgery coming up soon so had talked to the doctor about it, now they are trying to figure out if they even dare touch me. I have not talked to the anesthesiologist yet, although he is to call me today.
She also wants me to get a medical bracelet ASAP.
So now I am wondering if this is part of MCAS? Does this fit in with ME/CFS and how so many of us can't tolerate anesthesia???
If it was just one procedure, I think I would be fine with it. Problem is that it is a wire guided surgery and I am to have a wire inserted a few hours earlier. I had a biopsy a few weeks ago (negative for cancer at least) and mildly reacted to the lidocaine (epi free). So they want to give me epi free lido, then 4 hours later sedate me with what ever malignant hyperthermia drug. Doctor is nervous. As I have all ready stated, I have not talked to the anesthesiologist.
Hmmm, another thought, this IS the same hospital that my dad and brother nearly died in. Maybe they still have records from that far back. Doubt it. But worth asking anesthesiologist.
Sorry this is so long, my brain is racing now.